Sunday, October 6, 2013

Perceptions

I have participated in a group study with the Alzheimer's Association and read quite a bit of information about communicating with people who have Dementia.  But, none of those experiences or articles had as much impact on my understanding of my own issues than the GEICO Motorcycle Insurance television ad.  The one with the motorcyclist who is made of money.  He rides by, money falling off his body, and a male on a motorcycle says;  "I wish I was made of money."  And the woman accompanying him says; "So do I!".   In my mind, that is a mean, disrespectful, unloving,  comment and if she was with me, she would be walking home!

Now I have never been a fan of "walking on egg shells"  around people.   But, I also try to be considerate of others feelings.  For instance, I always call older women, Young Lady!  I have never had one of those ladies recoil or act indignant with that comment.  Instead they smile!  But, I now realize how simple observations by people around me causes me hurt, anger, and even depression!

My mind processes things different than it ever has.  Innocent thing said by individuals has caused me emotional pain.  Yet, I don't want to respond to these comments with angry words of even in a defensive way because I really can't decide if they meant what they said to be a spa or mean comment directed at me or they are simply making a general observation.   So, I just internalize what was said and how it hurt me.   This is not good foe me and I know it.

There is also the issue that those of us with Dementia need more time to respond to a question than those of you without Dementia.  That causes the questioner discomfort and leaves the Dementia patient feeling neglected.  Especially when someone answers the question for the Dementia patient or just says; "never mind!"

Also, things like the GEICO Motorcycle ads leave me feeling less masculine, inadequate, and disrespected.  And before you tell me; "It's just a TV Ad!" I will tell you people make comments to me, in the course of a conversation, that are exactly like the GEICO ad and hurt me and leave me feeling useless.  I never respond, I just retreat into myself.

But, I am sure that other Dementia patients suffer from this emotional issue too.  I have a friend that has Alzheimer's and he does tell his wife she is being disrespectful to him.  Now, I know she is not! But he sees her actions as disrespectful.  And, in the case of the Dementia patient, it is what we believe you meant, not WHAT you meant.  Remember, we live in our own world with our own perceptions, colored by our broken minds.  Even if the Dementia patient is early in the disease, or having a good mental period, we still have broken processor and perceive what is said with broken filters.

So, as a Dementia patient, who is well into the middle stages of this disease, I recommend that you, the care giver, understand the mental state of your Dementia patient and try to work with that patient in the place he or she is.  This will help both parties.

Another issue we Dementia patients suffer from is how we do what we do.  We try our best to do what ever we do, as well as we can.  I realize that I am not as good at most things as I was before LBD.  But, that does not detract from the fact that I do my very best, all the time.  Think about that when you criticize our efforts.  Remember, out brain processes thing different that before and different than yours!  Criticism hurts as much as the off hand comments I talked about earlier.  Maybe even more, because they are directed at us.

I am not trying to be mean or trying to get back at those comments.  And I am not saying that what someone says or how they say it to a Dementia patient, is wrong or bad in normal situations.  But we are not normal!  I am trying to give insight into the brain of a mid-term Dementia patient and how things said and the situations that surround those statements impact us.  We cannot "just deal" with what is said.  That part of our brain is broken, dead!  You, the person not effected by Dementia, can deal with what you say because you can understand how our minds work, if I tell you.  And, I have.


1 comment:

  1. Sleep plays a role in Lewy bodies. Mayo Clinic researchers examined the medical records of 75 patients diagnosed with probable dementia with Lewy bodies.

    They concluded that people are five times more likely to develop Lewy body type dementia if they have a condition called "rapid eye movement (REM) sleep behavior disorder" http://malalzheimer.blogspot.com/2013/09/what-is-dementia-with-lewy-bodies-what.html

    The study concluded that sleep disruptions are a very powerful marker for the disease, people normally do not move during REM sleep but this was not the case with those with DLB.

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